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Re: 3 mos post-hysterectomy chronic pain
From: Mary (anonymous@obgyn.net)
Sun Mar 3 15:15:03 2002
Suzanne---I have a fairly similar situation --the central issue of
removing the endo properly is my main concern. I had a partial hyst in
May 2001 (uterus only--suspected adenomyosis). I have a long history of
endo (I am 44). It was not diagnosed until very late and I had a lap in
1996, which successfully removed endo and I was pain free while on
continuous BCPs for five years. Pain returned in late 2000, but a lap
in Jan 2001 revealed no endo lesions at all, although I was in severe
pain. I do have fairly extensive scar tissue on colon, bladder, etc. I
was shocked that no lesions were found. My doctor suspected adenomyosis
but MRI did not show it (this is common). Pain was unbearable and
constant by then and after Synarel completely relieved the pain, my
doctor felt it must be adenomyosis. Nothing showed up on pathology
after surgery but I was completely pain free for 10 months until last
night. I am of course quite devastated that it has returned so quickly.
I fought to keep my ovaries and cervix despite the risk of recurrence. I
am now terrified of having a total hyst if pain may recur--no lesions
were seen at surgery last May, only scar tissue. I guess scar tissue
could cause this pain but I am afraid the doctors do not know how to get
rid of the endo and a total hyst may not end the pain. Who did you see?
How did you go about it? Was it through a primary doc or on your own? I
am in the Boston area and we have terrific medical care here, but I need
to find a new doctor who is a specialist in endo. Did your health
insurance cover it OK? My husband has great insurance and finances are
fine, but this could still be a time consuming, difficult issue as far
as finding the right resources. Any thoughts will be MOST appreciated.
Thank God you found such a great doctor!!!!
Mary
At Sun, 3 Feb 2002, anonymous wrote:
>
>At Fri, 2 Mar 2001, suzanne wrote:
>>
>>I had tah/bso for severe endo, adhesions and adenomyosis. Within 2-3
>>months after that surgery my pain came back with a vengence. I also had
>>severe bladder and bowel symptoms. Hysterectomy is not a cure for
>>endometriosis, so there is a chance you may still have endometriosis in
>>your pelvis.
>
>>I had surgery with an endo specialist 8 months after the tah/bso and he
>>found a great deal of endo left in me (even though the first doc swore
>>he got it all!).
>>
>>Endo was found on my bladder, ureters, colon, rectum, vagina, and broad,
>>round and utersacral ligaments. Plus my entire peritoneum was invaded
>>with endo. If your surgeon is not an endo specialist, he may not be
>>familiar with the many appearances of endo, including microscopic and
>>may have left some.
>>
>>The Endometriosis Sourcebook contains much information regarding
>>endometriosis continuing after hysterectomy. Also the following website
>>may be helpful: http://www.scmc.org/endo/html/reprint7.html
>>
>>It was a difficult time in my life, especially after going to the endo
>>of the line and still be suffering. But I am happy to say I am endo
>>free and pain free after 26 years with this disease. I only wish I had
>>known about the endo specialists sooner.
>>
>>You can e-mail me anytime at living@nwlink.com
>>
>>--
>>suzanne
>>
>>At Wed, 28 Feb 2001, anonymous wrote:
>>>
>>>Hello everybody,
>>>I am 3 mos post-op TAHBSO,for uterine wall thickness endo.I also had a
>>>prolasped sigmoid colon,cystic cervix & ovaries.My left ovary contained
>>>a large 4cm abcess.I was re-hospitalized 7 days post-op for multiple
>>>seroma's(fluid collections)recieved 7 days of IV antibiotics.I have been
>>>closly followed by my surgeon,CAT scans,labwork.All but one seroma has
>>>resolved and it is 3mm round buy 4 inches long and is located between my
>>>bladder and rectum.I have been on oral antibiotics(leviqin)until 2 weeks
>>>ago.
>>>I have chronic pain(threw away pain pills..didnt help noway)in my lower
>>>addomen,sharp,and intensed by walking,sneezing,laughing,and peeing.I
>>>have a chronic clear vaginal discharge which cultures negative for
>>>bacteria.I have been treated by my urologist twice this month for UTI.
>>>My spouse and I only recently attempted intercourse and noticed that the
>>>discharge became very heavy and I felt a sharp pain in the upper left
>>>vagina and left side pain.I also have developed right elbow
>>>pain,bilateral hip pain and sharp shooting pain down the backs of both
>>>legs when i stand from a sitting posistion,sometimes I have rectal pain
>>>as well.Sorry i have rambled,but I am really concerned,my Gyna just
>>>keeps telling me about the same.Will see him in the morning.Is this
>>>common so far out after surgery or has anyone else have or had the
>>>same??? Thanx
>>
>I just had a hysterectomy 3 months ago for fibroid tumors and had my
>cervix removed. I never imagined what was in store for me. I wish I
>would have researched possible complications w/ hysterectomies more
>thoroughly before I proceeded with it. I also had severe spasms of the
>bladder with incontinence (which really freaked me out - because I have
>never had bladder problems in my life) and bowel symptoms - severe
>constipation and gas. I don't have ENDO. I had severe lower back pain
>and pain running down my legs. The urethral incontinence and the back
>pain stopped after I had a procedure by an anesthesiologist who put a
>short catheder under the skin over the sacral nerves and injected it
>with depo-medrol. The back pain and leg pain went away almost instantly
>and has not returned and it has helped stop the urethral incontinence.
>It appears that during a hysterectomy or other major surgery the nerves
>in your back get traumatized and quit working until they regenerate -
>this may take up to six months. With the depo medrol injection it
>reduced the inflammation in the nerves in the lower back and the bladder
>started responding again and I started regaining control. This helped
>me, but there could be serious side effects by using depo medrol - but I
>did not experience any problems. I still experience excessive vaginal
>wetness and I don't know what I will do about that. I hope I have
>offered some information.
--
Mary
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